Well, it’s a bit of a guest blog, in that I wrote it for my friend and creative genius Diane Goldie. I reproduce my section of the article here, with permission, and strongly recommend you click through to Diane’s site not only to see and hopefully either purchase or commission some of her wonderful innerwear (as I am now calling it), but also to read the full post which is longer than my mere wordage below! I’m leaving the photos of me wearing said Diane Goldie productions, so you’ll have to click to see that!
https://www.dianegoldieartist.com/blog/guest-blog-number-4-tina-price-johnson
Wearing Myself
I first ordered a bespoke Diane Goldie artwork dress in 2014, in anticipation of the first handfasting celebration that I had been asked to participate in. I wanted something unique, a dress that reflected me on a very basic and spiritual level, which also made me feel comfortable and look fabulous. No pressure on Diane at all then!
So many images, so many words, so much that needed streamlining to fit on a dress; I knew the style I wanted, I knew the base colour I wanted, but what else? What images could I select that would make me feel I was wearing my soul on the outside?
Diane is a fabulous collaborator; she intuits what you want, and the clothing is a part of you, not a covering for your skin. My dress is an extra limb, a constantly firing neuron, an unspoken shout of who I am.
So of course, one is not enough and I have already purchased another off-the-rack sale item which again seemed to have been made for me. Who knows, maybe it was? It just took the sale for the dress and myself to find each other.
To wear a Diane Goldie artwork is not just to wear an item of clothing. It is wearing oneself out, loud, proud and honest. It is a pride in myself that doesn’t put me above others, but above my own insecurities and my worst fears. It is a shield and a sword that cuts through the bullshit to who I am and to who those who see it are. I can trust the reactions of those who see what I am wearing.
If they love the clothing as much as I do, then I know I may have found a new friend.
I have ideas for my next commissioned piece. That’s the (not a) problem with Diane Goldie clothing; like tattoos, you will find yourself always wanting more!
Bill Cosby has been sentenced to 3 to 10 years in prison, a lifetime on the sex offenders register, must undergo mandatory counselling, and is considered to be a sexually violent person with a high risk of reoffending. He is 81 and it has taken 50 years of his offending for his case to be taken to court, and for him to be convicted.
He is not the only man to have been accused; he is not the only man to be being taken to trial. He is the first, and I think it would be naïve to assume that his skin colour has nothing to do with the fact he has been convicted. For all his power, he could not fight the inherent systemic racism in the system.
He is guilty, let’s be clear on that. He deserves his punishment, and considering how many victims there are and how long his offending has been going on, he got off lightly. He has had over 50 years of success, fame and wealth. His victims have had careers and lives ruined and even now, many will not be believed.
Harvey Weinstein will be the next high profile trial which has comparable status to that of Bill Cosby, with the latest accusation being that of sex trafficking. It will be interesting to see how that trial goes.
It is also fascinating to watch the furore around the POTUS Donald Trump’s Supreme Court nomination Brett Kavanaugh, and the two accusations that have been levied against him. Will Kavanaugh face a trial or will he be appointed to the lifetime role of a Supreme Court Justice and be in the position of making law and setting precedent despite the strong possibility (at the time of publishing the blog) that he has broken it? The hearing regarding the accusation by Christine Blasey Ford is set for tomorrow, and the vote with regard to his appointment is set for the day after so we don’t have long to wait. It should be remembered that this is an accusation of assault on a 15-year old girl by a then 17-year old boy. The accusation made against him by a fellow student whilst at Yale is not scheduled for a hearing.
Trump has loudly criticised the accuser in myriad ways, all of which a basic google of statistics and sociological studies of sexual abuse, harassment and rape cases would have showed him are very common ways of reacting when one has been victimised in this way. He asks why she didn’t report it, and implied in a tweet that ‘her loving parents’ would surely have gone straight to the police if she had told them; this has the extra twist of implying that either she is lying or her parents didn’t love her because they didn’t report it at the time.
Every word Trump has stated about this matter has been cruel, vindictive and I believe based in the very real fear that he sees his behaviour in Kavanaugh and wishes to push Kavanaugh into the Supreme Court so he himself will never have to face the consequences of his actions. This is a man who admitted to grabbing women’s ‘pussies’ without their consent, to simply kissing beautiful women he sees without consent because he can’t help himself, and to walking into changing rooms of beauty contests (some contestants being underage) to see them in varying states of undress.
It would be a fallacy to assume that rape culture affects all people in the same way; misogynoir means that women of colour find themselves victimised by gender and race identity, entrenched homophobia means male-identified victims are disbelieved, transphobia leaves transgender people victimised at horrifically higher rates that cisgender people. Patriarchy sees convictions very difficult to obtain if the charges are laid at all.
Racism finds the perpetrators treated differently depending upon the colour of their skin. Bill Cosby had all the power, all the prestige and all the wealth at his fingertips, but still finds himself rightfully convicted. What he did not have was the ‘right’ skin colour.
I hope very much that justice will be achieved for all those victimised by predatory males. Until we rid ourselves of systemic misogyny, sexism and racism. However, I will not be holding my breath until it is achieved.
I love Buffy the Vampire Slayer (BtVS). Yes, I have used the correct tense, even though it ended in 2003 (almost a whole UK school child ago; well until they said you had to stay until 18 years old, but I digress…). I love it with a passion and intensity that a fan will understand. Its seven seasons helped me through some emotionally turbulent times, and I resonated with all of the characters at one time or another. There is so much about it that I could write a very long, detailed dissertation about why I love it and how it helped me, but here is one example:
Picture it – I am sat with two close friends watching (box-setting) some Buffy. It’s the musical episode, and I am watching Buffy put her hands into flames. I have been discussing personal problems with said friends and I say “I just wanted to feel something.” Buffy etc. then burst into song, with “I Just Want to Feel”, and I get it. I feel heard, I feel understood, I am able better to understand and deal with what-turned-out-to-be clinical depression. The show helped me open up to others and to myself.
Now there is talk of a “reboot” of BtVS. Yes, Mr Josh Whedon, him of the then-lauded and now-problematic feminism (the rose-tinted glasses came off as the fan base grew up; I don’t mean chronologically and I absolutely include myself in this), has spoken of bringing the beloved televisual experience back, and it has not proven popular within the Buffyverse (again, I include myself in this). The showrunner working with him, Monica Owusu-Breen, has confirmed it is to be a sequel, not a reboot or remake.
A collective throwing up of hands and plaintive cries of besmirching of the beloved series have been sent out across the cyberwaves. At first, I was one of them. It was so good, so emotionally resonant, so cleverly scripted and superbly acted, so right, how could anyone, even Josh Whedon, consider bringing Buffy back? She was so good she died to save us all. Twice!
I have changed my mind. I’ve been thinking about why I loved it so much, and that I often wish there was something so mature and open, so inclusive, for my friend’s children to watched, and it dawned on me (as it did on Buffy, season 5 – ha, see what I did there?); why wish it when it looks like Josh Whedon may be about to reboot a series that would give them exactly that!
There were problems with Buffy at the time, not least its whiteness and able-bodiedness. This could be the opportunity to write those wrongs (pun intended). This could be Buffy 2.0, this could be Godfather II, The Empire Strikes Back, Aliens.
This could be the series that redresses all the criticisms of BtVS way back when. I really hope so, and I am excited to see the new series because of the possibilities it brings and the hopes I have as an intersectional feminist that it will really be that good.
Let’s just hope it’s not Roseanne (the Racist Trump-Voter Years). Nobody needs their memories destroyed like that.
Josh Whedon, we of the Buffyverse are watching you carefully. Please don’t screw this up.
And will someone please make a series about the Birds of Prey, lead by Barbara Gordon’s Oracle? Please?! I hear Gotham is ending soon…
Yesterday saw the 70th anniversary of the day the National Health Service was born, and it really was born, kicking, screaming, gasping for air and full of potential. It was not a popular idea and the Labour government of the time had to fight very hard to realise the dream of a healthcare service free for all to use. From its conception and throughout its hopefully immortal lifetime the NHS has been a focal point of discussion, derision, hope and fear, and there are very few people in the UK who have not been in contact with the NHS at some point in their lives.
First page of the leaflet introducing the new service to the country; July 1948
The NHS is, for me, the pinnacle of what social care can be. “From Cradle To Grave” as the initial leaflets informing people about the new service for all would state, we are now gifted with healthcare to protect and preserve us all. If we have a serious illness or life-changing accident we know we can receive treatment and rehabilitation without forcing our families (if we are lucky enough to have support) into potential poverty. If we have chronic conditions, we are not forced into paying sky-high insurance premiums if we are lucky enough to find insurance that will cover us, or having to make a serious decision as to whether our life is worth saving as opposed to the futures of our families or even our children, as insurance-based healthcare systems make their poorer citizens do.
It is a flawed institution, of course it is. Almost from inception it has been underfunded, and there is always debate about how funding is organised, the postcode lottery of services offered to people, whether there is too much middle-management or not (spoiler: yes), what treatments should or shouldn’t be covered (homeopathy, I’m looking at you), but all systems are open to critique and that does not mean we should dismantle them.
Without the NHS I would be dead. From birth, when my twin and I stayed slightly longer than normal in hospital partly because we were slightly jaundiced, partly because hospitals were nervous about multiple births at the time, and partly because we were a little bit early (again, because we were twins), I have been looked after by the NHS.
- Aged 12 – I was diagnosed with epilepsy; I am on medication for this for my lifetime. Without the NHS I could not afford to pay for this medication. My seizures would have continued, possibly worsened, they would have continued to come on without warning, and I would therefore have been in life-threatening situations every single time I fitted.
- Aged 25 – diagnosed with clinical depression; I’ve been on medication twice now for this condition, and sought counselling twice. Mental health is an area in dire need of funding.
- Aged 31 – diagnosed with spinal osteoarthritis which has since spread into my shoulders, neck, hips and is radiating outwards. I am on lifelong pain medication for this.
- Aged 42 (just) – diagnosed with chronic lymphocytic leukaemia and am on the Watch & Wait protocol until treatment through chemotherapy is indicated. This is a complicated one, I do have cancer but it is known as one you live with rather than die from, although as I am 30 years younger than the average age for a diagnosed patient, it’s a bit up-in-the-air with regard to future prognosis; thusly the term ‘watch and wait’.
(I also have PCOS, sciatica and recurring Jessner’s Lymphocytic Infiltrate, but I consider those to have less of an effect on me that the conditions listed above)
I also received free dental treatment throughout my childhood which was lucky as I needed to wear different forms of braces from the age of 12 until they were removed shortly before I was 18. Even now, the fee is minimal for a regular check-up, although having any fee for dental check-ups does mean many can no longer afford to go once they are past the age of minority.
The NHS has saved my life repeatedly, mentally and physically, and I am very deeply grateful for its existence and its continuation.
The NHS is in crisis in its 70th year; funding is desperately short and we are facing a loss of staffing as a result of Brexit even as we have a shortage of 100,000 medical personnel. We need to fight harder than ever before to preserve the institution; imperfect, cumbersome and confusing as it may be, it is ours and it is an achievement admired worldwide. “A Little Help From My Friends” is being released today, Friday 6th July 2018, for download to help raise funds, and can be found by clicking on this link here and downloaded by clicking here.
I will leave you with this, the Lewisham & Greenwich NHS Choir performing “A Bridge Over You” (a Simon & Garfunkel and Coldplay mash-up) which still makes me cry tears of pride, joy and happiness. The male soloist was my Emergency Doctor five years ago and this is MY hospital; you will be glad to know this single got to number 1 for Christmas 2015 charts after a massive campaign to get it there.
Whatever its problems, I very much wish a Happy Birthday to my beloved NHS, and will always raise a glass to many, many birthdays to come.
I love you, NHS.
Or, A Discussion/Debate is a Difficult Thing to Have!
I’m sure all two of my readers will be utterly shocked to read that I have been cogitating the concept of discussion and debate lately. It comes from the many discussions/debates I become involved in in real life as well as on social media (and social media can be a great tool for opening one’s mind and challenging one’s ideology, if one has been trained in and/or understands the difference between verifiable fact and opinion-based truth).
The UK House of Commons ‘debating’ chamber AKA how not to discuss or debate. If you’ve ever seen Prime Ministers Questions it’s like a bunch of toddlers shouting over each other –they should all be in time-out!
I’ve banged on about context before and for me context is the fundamental basis upon which any discussion about a point which is being made is based, and context can change depending upon the circumstances from which we are basing our opinion and stating our personal truth.
Opinion is not equal, nor should all opinion be given equal time or weight in discussion. The most obvious example of this is the debate on climate change, when 97%* (or more) of scientific opinion is clear that human action has had and continues to have a detrimental effect on the environment. Political opinion is more varied and this can be seen in the policy governments make on climate change and steps that can be taken and are taken by such governments.
Scientific opinion is independently verifiable, factually based and empirically tested. Political opinion is based on the most popular current democratic (to a given value) elected government and is not always independently verifiable through quantifiable and qualitative study. This is why governments can make what may seem to many people as the planetary suicidal decision to ignore climate change science because of economic policy driven by unregulated capitalist ideology (for one such example) [coughUSATrumpcough**].
Similar thought processes on a much more micro level can show up in discussions on social factors such as sexist language, racist actions, the expression of transphobia etc. I’m not only talking about opposing viewpoints but also about views which we may know are similar to our own but which are expressed in opposition.
For example, my basis of knowledge is academic and life-learning, as well as experienced as a white, cisgender, disabled (though not always visibly), mental-health challenged, sociology graduate (in race, gender and sexuality as topics of specific study), university-educated, UK(London)-based woman working in the legal profession. There is a whole raft of privilege and oppression going on in there, all of which influences not only what I think but how I think and how I express what I think.
Others have entirely different experiences. Some may come from a linguistic background and for them it is the etymological basis of words which drives the meaning of a post (and that can change the personal inferred-context of a discussion quite dramatically), for others it is what they have learned from newspapers and the bias contained therein which colours the way in which they understand debating issues, for more it is where they live and the society they are surrounded by which is the core of their belief system; generally it is a combination of many factors.
I try to think from the outside in as opposed to the inside out, and that is what drives my discussion, my research and my understanding. I try to analyse the context of a post in a holistic way – what does it actually say, who may be reading it, what language is used and what it the sociological environment in which it is created? I try to remove myself but of course that is not possible, I am the culmination of my experiences, knowledge and understanding. It is possible to address those privileges and oppressions and see how they may be affecting my reading of a post however.
The best way I can see to do this is to remove myself and subtract the privilege I have and the oppression I see, to try and understand what is being stated. Each statement made also has its own context – it’s really complicated, this debating thing, and something that can only be streamlined and developed with practice.
Sometimes what a point is saying is more important that the linguistic arguments one may raise about the way the point is worded because social context trumps linguistic context; what we may know to be true about an etymological point may not be understood by the majority of the people to whom the post is addressed. Conversely the alternative may be true, if it is a point being made in a linguistically-based discussion, then the linguistic context trumps the social context.
At a more basic level, the voice of the oppressed should be given more weight that the voice of those who are identified with the oppressor when giving testimonials. The verifiable study which has been and can be empirically reviewed and repeated should be given more weight that that of someone who has read a couple of newspaper editorial opinions on the subject. That does not mean the one who has only read a couple of newspapers is wrong, at least not all of the time, but it does mean the foundation from which the opinion has been formed is not as solid.
Source of graphic: http://pediaa.com/difference-between-debate-and-discussion/
For me, it is extremely important to take into account who may be reading/hearing the discussion and to assume a level of knowledge which is minimal. This blog originally referenced debates only and now it’s now about both debates and discussions. That changes the context and is more pertinent to the point I’m hoping and trying to make.
When engaging in discussion I try to have a broader understanding of the social context through which the discussion points may be inferred; it may not be about you! Of course, social media and the internet is world-wide, but in that case, try and state the context from which the post is made if you are making it, or implied, if sharing it, and then work from that.
It is the reader/listener’s responsibility as much as it is that of the person who is making the point to ensure communication is a two-way street.
*https://climate.nasa.gov/scientific-consensus/
** https://www.newyorker.com/news/daily-comment/au-revoir-trump-exits-the-paris-climate-accord
Sooterkin™ and I recently enjoyed a fabulous meal for my birthday/our decadaversary (10 years legally spliced, good grief!) at a local restaurant called Parlez, courtesy of a prize I won in a raffle at the Rushey Green Timebank (RGTB).
I have blogged about my time-banking before and am shocked to realise I’ve been involved for over seven years now. Seriously, where does time go? Is it under the bed? Do I sleep for days without realising (certainly doesn’t feel like it)? WHAT WEIRD MAGICKS IS THIS?! (Also, you will note that I am a big fan of the pun and the alliteration and make no apology for this – I have little wit enough to deny myself those pleasures).
I do not believe I have mentioned the involvement of Lewisham Local in the time-banking project before, as if you needed further incentive to get involved in the time-banking scheme, local resident readers of this blog. Other time-banking groups do exist so please have a google (or other search engine of choice) and sign up.
Lewisham Local is a charity which supports the residents of and visitors to Lewisham Borough in whatever way they are able through connecting potential volunteers with charities matching their abilities, and through supporting local businesses who give discounts to volunteers and gain loyal customers as a result (3,000 business involved at last count). Parlez is one such business, and it is my involvement in the RGTB that enabled me to support my local restaurant and enjoy a fabulous date with my darling (I did warn you about alliteration).
There is a warm feeling of satisfaction and self-worth that comes from volunteering. I offer my legal skills in advising those who can’t afford to have a professional Will drawn up or to consult a solicitor in dealing with the estate of a newly-departed loved one. RGTB is very careful not to tread on the earning toes of professionals, however, and I cannot draft actual Wills, but can check those already drafted and advise on wording and the impact of what their expressed wishes may be. My firm offers 50% discounts to those who decide they do wish to employ me, but few do and nor would I expect them to. This is a very poor borough and I want to do my bit to make sure that those who cannot afford it still have the legal protection and advice available to them; I’m very happy to say my firm supports me in this.
There are so many other volunteering skills that can be offered though. That’s the beauty of Time Bank. You may not think you have anything to offer; I didn’t, but my Wills service is one of the more popular services offered on our open days (I am told, I still find it a bit hard to believe). There are people who offer bike repairs and lessons in how to repair, computer and IT skills, sewing lessons and offers to mend clothing (I have taken advantage of this), there is the Wildcat Wilderness Garden in Catford which has volunteering days and offers myriad opportunities to the local community at open days and for school visits, there are people who volunteer to change lightbulbs and put up shelves, there are those who help tidy the houses of the elderly and immobile, there are volunteer gardeners who will tidy and teach how to tidy yourself, people who will drive others to hospital or doctor’s appointments and accompany them if need be, even something like volunteering to read to a person who is homebound or simply spend time with them; you name it, there will be a voluntary position available for you to do it. If you think you have nothing to offer, I can tell you right now you are wrong.
It is a simple exchange of time. You spend an hour volunteering and you receive an hour of help.
For me, though, it is so much more than that. It is a chance to support my local community, to know the people and mix with those who I may never get to meet otherwise. Oh, the conversations I have had with elderly members of our community – the naughty minxes! It is a chance to give and to learn how to receive. It helps me move past the prejudices of society to become a productive member in ways that are not simply listed in an accounts ledger.
Me, volunteering at RGTB.
I feel valued and valuable to my community and I know that every single member of RGTB feels the same way. Not better than anyone else, nor worse, but as valuable as any other human being is. We are all simply members of our local community who want to give and may need to receive and are happy to use our time in this way. It doesn’t matter the level of our ability, there is something that we can offer, including allowing others to help us!
Please consider joining a similar organisation in your area. If there isn’t one, why not start one? Time is one thing that we all have an equal amount of to spend, and none of us know when that particular account may run out of funds so why not get onto spending it now? You won’t be sorry. I promise!
A very well-respected, knowledgeable and erudite friend of mine who I shall call “Cabrita” (which will amuse them) posted a question on Facebook: “True or False: POC are treated horrifically in many countries; women are treated horrifically in all countries”.
My response was that I “lean towards True, adding – Disabled people are treated horrifically in all countries, non-heterosexual people are treated horrifically in all countries. However, I would say that white women are not treated as horrifically as women of colour; I believe oppression is intersectional (as is life!) and access to money reduces the horror of the way one is treated, if one is defining horror on a sliding scale of physical/emotional oppression. Oh lawks, there may be a blog in this…”
Well, they can’t say they weren’t warned!
The separation of identities into categories of oppression is very useful in creating public policy and law to deal with discrimination and bigotry, but it is not reflective of the human experience. Cabrita is excellent at inspiring discussion, and this is the very heart of what the Elizabeth “Betita” Martinez, who identifies as a Chicana Feminist and is a founder of the Institute for Multiracial Justice, coined as ‘Oppression Olympics’.
It is necessary to have statistically verifiable data in order to create public policy and clarify campaign strategies. However these statistics should not be used out of context. They need to be applied to the real world and people’s testimonies are vital to a true understanding of the systemically racist, sexist/misogynistic, ableist, heteronormative, homophobic, transphobic, class/economic status-ridden society we live in.
Whenever comparative oppressed identities are brought up any discussion is derailed. Voices of the oppressed are silenced by more privileged voices of the oppressed. In such discussions you will often find that it is when someone brings up how, for example, the life of a black woman in the UK is harder than that of a white woman, the white woman will become defensive and accuse the black woman of derailing the conversation when in fact to deny the validity of the intersectional identities is a bigoted act in itself.
Yes, it is possible, and in fact is very likely, that someone who is oppressed in one way will be privileged in another. I’ve written about privilege before, and this video is a very handy visual tool to explain it.
An inversion of the ideal of Oppression Olympics to Privilege Pedestals (I like the alliteration) would put the onus on those who hold privileges to address that privilege rather than those who are oppressed to continually fight for their right to be respected and accorded opportunities without facing bigotry. Reverse the video and the ones in front are on the taller pedestals, better able to reach the healthiest fruit at the top of the tree, as opposed to those at the back who are relying on fallen rotten fruit on the ground.
It’s long past time those with privileges stopped expecting those who are discriminated against to do the heavy lifting. It’s true that in any society no social advancement has ever been made without violent uprising, however much we may wish to whitewash (word deliberately chosen) such histories into the belief it was quiet polite protest that worked. Check out the suffrage movement in the UK or the Civil Rights movement in the USA, for two examples. The violence was (and continues to be) perpetrated against those who are discriminated against, yet somehow such violence becomes unacceptable when perpetrated in self-defence by the oppressed.
Add to and/or remove from this card whichever privileges are relevant to your society; I’m in the UK, and write from my experience in this country.
Across the world in myriad ways discriminations are perpetuated; they vary according to society, but there is a commonality of experience which would show that there are root causes, such as religion doctrine or unregulated capitalism, which rely on oppression to keep a society unequal in opportunity and therefore malleable and easy to mould. Women in Saudia Arabia being excluded from driving, girls in various cultures (Christian and Muslim) being subjected to FGM across the globe, disabled people in the UK being forced into proving their conditions again and again simply to be afforded the small allowance the welfare system now allows them, non-gender conforming people and non-heterosexual people being outlawed and murdered by both the state and the people in their countries such as Russia, Iraq and Iran, with a seeming impunity, people of colour in the US unable to trust their own police force for fear of being murdered at the hands of those supposed to protect them, and so on. It’s all horrific.
When we talk of Oppression Olympics or a hierarchy of discrimination, we move the debate from dealing with the bigotry to an attempt to determine who is suffering more. We become separated and pitted against one another, and this only serves to benefit the privilege and keep those privileges in place.
Flip the script. Talk of Privilege Pedestals. See how high you actually are, and recognise others may be higher, but many will be lower. Until we are all on even ground, it is up to the privileged to do the heavy lifting and step in front of those who are being assaulted by discrimination. Stop expecting the oppressed to do the hard work. Stop dividing and allowing the hegemony to conquer. Use your privilege for positive change, wherever you may be.
I have recently attempted to switch from my prescription painkillers to using CBD oil for my chronic pain, which is caused by a combination of three of my chronic conditions, being osteoarthritis, sciatica and CLL. I have no idea which causes the most pain at any one time, because they combine and cannot be separated.
The experiment was a failure; I only managed 10 full days without painkillers using CBD oil, and by the tenth morning was in such pain I attempted to knock myself out on a wall and my beloved Sooterkin™ insisted on dosing me with conventional painkillers simply so I could lie down and rest (and stop him and our cat Millie worrying about me. What? She does worry, she’s a very clever cat!).
Now, a couple of weeks ago I’d decided never to put any status messages or public posts about my health on Facebook again, because all that happened was that lovely, well-meaning people would give unsolicited advice and question decisions I’d made which I appreciated for the sentiment and care behind them, but which meant my health decisions were not being trusted.
I have lived with one of my chronic conditions for 35 years. I have developed others over the years as detailed in my CLL blog post and I have written about how I have learned over the years to balance my lifestyle so that I can work and have a tiny social life whilst living with the pain. It’s not easy, it takes constant practice and working at all the time. There is no-one that knows my body and its limits like I do, not even the medical professionals I see on a regular basis. It’s difficult, because at the moment I have almost no social life; I have to prioritise work and at the moment that means the weekend is for recovery and weeknights are almost always out too (I can manage a Monday or Tuesday, occasionally a Wednesday, but that’s it). I’ve had to give up learning British Sign Language, because the class was on Wednesday, give up my Tai Chi, because the class was on a Thursday and 1 ½ hours long and stopped helping and started hurting due to my conditions degenerating further, I’ve stopped ever going out on a Friday, which appears to be the night when most social engagements are arranged as people find it easy to go from work to wherever … well, you get the point.
I never make a decision about my health without fully thinking through every aspect because that is what I have learned to do. Anyone with chronic conditions will do the same thing.
My life is shaped by my chronic conditions. Everything exists through the prism of the seven I have. Yet I cannot post status updates without having my decisions questioned, or advice proffered, or people stating their worry or their fears or even questioning my perceived ‘negativity’ simply by mentioning my pain.
Think about that. Basically, what is being said is that my life is a negative. That by posting about my life I am being inherently negative.
That is the privilege of living without chronic conditions, without disability. My pain is neither negative nor positive, it is a very big part of me and my life. If I should comment about it, I am simply making a statement about an aspect of my life, in the same way as I may comment about my family or my cat, a picture of whom I am putting here because she’s cute and it will lift this post.
Seriously, that snoofly lickle face would cheer up anyone!
I would love to post about my life fully, in the knowledge that people would not feel obliged or inspired or the need to give advice. Sympathy and empathy is fine, and I love those who have both and hope I can give as much as I receive. However, unless advice is specifically asked for I, for one, do not wish to receive it. It may be that others do, although the conversations I have had with other people who have chronic pain conditions would indicate that they get as frustrated as I do with unsolicited advice (although that is definitely better than receiving unsolicited dick pics, but I digress).
The basic rule should be that unless advice is asked for, don’t give it. I guarantee you that anyone living with a chronic condition knows more about their own body and their condition(s) that you could possibly know, and that they will have discussed, considered and questioned whatever it is you are about to suggest with many people, most of whom will be medical professionals. Quite often they will know more than the medical professional if not a specialist in that particular field. Please do consider what it is you are about to say, before you say it.
This post is aimed at myself too; I have offered advice and sought reasons for triggerings of chronic pain in others as well. It is ingrained in us to do so, but is unhelpful for chronic conditions. There usually is no specific trigger, chronic conditions just are.
Oh, and if you intend to post something to me from David Wolfe, or any other ‘alternative’ health site which criticises ‘big pharma’ or the ‘medical industrial complex’ using discredited information (misinformed anti-vaxxers, I’m looking at you) and/or evidence which simply cannot be proven or backed-up, just don’t. I am perfectly aware of such sites. If it is not scientifically, empirically valid, I’m not interested.
Three times in my adult life I have made the painful, difficult decision to end a long term close (I had thought) friendship. There is fault on both sides, but particularly with regard to the last one which came to a head last year, it reached the point where I came to realise not only had it been toxic for some time for me but that I was a toxic presence in my former friend’s (hereafter FF) life. It was thanks to the information received from mutual friends that I realised the toxicity was reciprocated.
I had tried very hard to try speak about the problems with my FF, to come to a solution, only to be blocked in every attempt. Texts were stopped, pages were blocked, conversations started by both of us were ended by my FF sometimes mid-flow. I am sure my FF would say the same. In every situation there is grey, and in the slow-burn ending of a previously very close friendship, there will be more grey than anything else. I am trying not to blame, and this is a difficult process. We are both responsible, and for the sake of my mental health, I have to accept there will be no closure, no understanding, no peaceful truce or clear cut-off. I will never be able to be understood.
This is only the third time in my life I have made myself take a final decision, and I have been on the planet for nearly 50 years. Even then in the latter case I only took the decision because everything came to a head as a result of a conversation with a mutual friend; it could have been a situation that went on for a far longer time to the detriment of us both.
The previous friendships ended when I realised that neither person actually knew who I was as a person, despite our long and deep conversations over many years. Their understanding of me was based on a misconceived and false image that they had projected onto me. I did not recognise the person they assumed I was. I even checked this out with other friends, so confused was I by this massive misunderstanding of my character. The situation was not fair to me and made me realise the friendship itself was not real but a fantasy. I was ending a friendship that had already disappeared, in all three cases.
Even now, many months after stepping back from my FF, I still find myself hoping that maybe something could change, but when the lines of communication have been shut down by the other person and when that other person is triggered by my presence, my word, by their misunderstanding of me, then there is little I can do, and I do not want to cause further harm to my FF by any attempt to do so.
This decision has been years in the making, I realise now. Neither of us know the people we have become, and to each other we are now strangers, strangers who were once non-blood siblings.
It happens, but my goodness it hurts. More than the loss of a lover, the loss of a friend causes a grief that chokes me. I cannot think of them without wistful mourning, without wishing to know they are well in spite of their lack of knowledge of me.
It hurts because they didn’t know me and they showed it. I spoke my truth and shared my secrets and still they did not understand the core of my being. That must be as much my aversion to conflict and therefore to correcting when I noticed, if I noticed. I do place the responsibility in my corner because it was from my corner I came out to fight for myself, my identity and the reality of who I am, and in moving out from that corner I was backed into I made the decision to end the friendships.
I have no idea how they feel about me now, or even if I feature in their thoughts at all. They still feature in mine, and most kindly now. The hurt they caused has faded and the memories of how close we once were remain. There was love there, once. That is enough for me to have fondness and hopes for their future.
I made the right decision, I know that. The right decision is often the hardest decision, but for the sake of myself and my FFs, it is one I had to make.
If they see this, and if they recognise themselves, I hope they realise I do still carry love for them and always will. It’s just that love is not enough, in any relationship, without truth.
